World Thalassemia Day is celebrated every year on 8th of May to increase the awareness about this disease among common public all through the world. Celebrating World Thalassemia Day on 8th of May was established by the World Health Organization in order to raise the public awareness about this disease, prevention measures and measures to avoid its transmission.
According to the statistics, around 19% of the total population is the carrier of Thalassemia gene in the Saudi Arabia Kingdom. Thus world thalassemia day is celebrated there as a big event by organizing variety of preventive programs to increase awareness and reduce spread of this genetic disease. This event celebration promotes and encourages the common public for the pre-marriage test to reduce the genetic problems among families.
8th of May has become a very special day for the people suffering from the thalassemia as it brings a chance for them to get diagnosed earlier. The day is dedicated to commemorate the thalassemia patients and give them a special chance to live like a normal person as well as prevent this disease to spread in the community, society, state, country and finally world.
WHY WORLD THALASSEMIA DAY IS CELEBRATED
World Thalassemia Day is celebrated all across the world to help people suffering from the thalassemia and its complications in their daily life. Thalassemia is a genetically inheritable blood disorder which can affect people of any age group. It is a disease which having ability to destroy the whole nation and world by affecting a child. Children are the most important asset of the country and world who have capability to lead their nation and world thus it has become the big responsibility of the government of each country to prevent children, country and world from this fatal inheritable disease. Some of the objectives of world thalassemia day are mentioned below:
- It is celebrate to increase the awareness about the disease among common public.
- To develop a most effective prevention measure to have control on the disease.
- To motivate and encourage the common public especially youths for the blood donation in order to prevent the people suffering from thalassemia.
- To motivate doctors and other health professionals to take care of the patients especially what they need.
- To promote the people suffering from it to come to the hospital for the early detection, prevention and cure.
- To motivate the youths for the pre-marriage test to get diagnosed about this problem and prevent this disease to get inherited among new generations.
- To make the community, society, nation and world free of thalassemia and other inheritable diseases.
- To give them (people having thalassemia) equal chance of living like a normal and wellbeing person.
- To encourage government organizations to develop more heath care facilities in the vulnerable area.
- To reduce the death rate of people all over the world on international level because of the thalassemia.
- To increase the number of healthy people without thalassemia or other fatal diseases in the country and world.
WORLD THALASSEMIA DAY THEME
This special day is celebrated every year using a particular theme to make it very effective and encourage patients for getting appropriate treatment to enhance their quality of life. Some of the year wise themes are listed below:
- The theme for 2016 was “Access to Safe & Effective Drugs in Thalassemia”.
- The theme for 2015 was “Enhancing partnership towards patient-centered health systems: good health adds life to years!”
- The theme for 2014 was “Economic Recession: Observe – Joint Forces – Safeguard Health”.
- The theme for 2013 was “The right for quality health care of every patient with Thalassemia: major and beyond”.
- The theme for 2012 was “Patients’ Rights Revisited”.
- The theme for 2011 was “Equal Chance to Life”.
- The theme for 2010 was “Thalassemia: Knowledge is Strength”.
- The theme for 2009 was “Together industry. We Care”.
Causes
Hemoglobin is made of 2 proteins:
- Alpha globin
- Beta globin
Thalassemia occurs when there is a defect in a gene that helps control production of 1 of these proteins.
There are 2 main types of thalassemia:
- Alpha thalassemia occurs when a gene or genes related to the alpha globin protein are missing or changed (mutated).
- Beta thalassemia occurs when similar gene defects affect production of the beta globin protein.
Alpha thalassemia occurs most often in people from Southeast Asia, the Middle East, China, and in those of African descent.
Beta thalassemia occurs most often in people of Mediterranean origin. To a lesser extent, Chinese, other Asians, and African Americans can be affected.
There are many forms of thalassemia. Each type has many different subtypes. Both alpha and beta thalassemia includes the following 2 forms:
- Thalassemia major
- Thalassemia minor
Thalassemia minor occurs if you receive the faulty gene from only 1 parent. People with this form of the disorder are carriers of the disease. Most of the time, they do not have symptoms.
Beta thalassemia major is also called Cooley anemia.
Risk factors for thalassemia include:
- Asian, Chinese, Mediterranean, or African American ethnicity
- Family history of the disorder
Symptoms
The most severe form of alpha thalassemia major causes stillbirth (death of the unborn baby during birth or the late stages of pregnancy).
Children born with beta thalassemia major (Cooley anemia) are normal at birth, but develop severe anemia during the first year of life.
Other symptoms can include:
- Bone deformities in the face
- Fatigue
- Growth failure
- Shortness of breath
- Yellow skin (jaundice)
People with the minor form of alpha and beta thalassemia have small red blood cells but no symptoms.
Complications
Possible complications of thalassemia include:
- Iron overload.People with thalassemia can get too much iron in their bodies, either from the disease or from frequent blood transfusions. Too much iron can result in damage to your heart, liver and endocrine system. This system includes hormone-producing glands that regulate processes throughout your body.
- People with thalassemia have an increased risk of infection. This is especially true if you’ve had your spleen removed.
In cases of severe thalassemia, the following complications can occur:
- Bone deformities.Thalassemia can make your bone marrow expand, which causes your bones to widen. This can result in abnormal bone structure, especially in your face and skull. Bone marrow expansion also makes bones thin and brittle, increasing the chance of broken bones.
- Enlarged spleen (splenomegaly).The spleen helps your body fight infection and filter unwanted material, such as old or damaged blood cells. Thalassemia is often accompanied by the destruction of a large number of red blood cells. This causes your spleen to enlarge and work harder than normal. Splenomegaly can make anemia worse, and it can reduce the life of transfused red blood cells. If your spleen grows too big, your doctor may suggest surgery to remove it (splenectomy).
- Slowed growth rates.Anemia can cause a child’s growth to slow. And thalassemia may cause a delay in puberty.
- Heart problems.Heart problems — such as congestive heart failure and abnormal heart rhythms (arrhythmias) — may be associated with severe thalassemia.
Inspirational Story:
Jyoti was a thalassemia patient. She was three months old when she was detected with thalassemia, which was long before she understood the full meaning of her ailment. Her parents though shell shocked, wanted Jyoti to have a happy and fulfilling childhood.
They sent her to the same school that all the neighborhood children went to. Her school was disrupted often, and for days together, when she had to be admitted to the hospital.
This continued for a few years and when Jyoti was in Class 7, she had to drop out of school. This was a huge setback. But Jyoti was not going to let her illness win over her. She not only completed her school through correspondence but also got a Master’s in English and Applied Psychology.
Jyoti loved reading. Books were her best friends and she devoured every genre; she would submerge herself in classics that were written hundreds of years ago. She would dream about stories, about writing stories, about other children reading her stories. While thalassemia stunted her growth and regular blood transfusions increased the iron content in her body, what did not change was her love for books. She started nurturing a dream, a dream to write her own book.
Jyoti started her professional career as an English tutor, while simultaneously writing articles for a couple of magazines. After that, she worked for a few years as a freelance writer and content developer. Her primary role was to abridge classics and make them suitable for pre-teens to read. She also wrote fiction/adventure books for children. After working in the freelancing space, Jyoti took up full time employment with a US-based recruitment firm where she was awarded the best employee of the year award for 2014.
The battle with thalassemia continued. However, there was no stopping Jyoti. She was convinced that her soul lies in writing and her first novel — Dream’s Sake — was published in the year 2011.
The novel is based on the psychological conflict of physically challenged people. She went on to self-publish her second novel — Lemon Girl — in the year 2014. The theme of Lemon Girl is women’s abuse and oppression. Both her novels have garnered positive reviews from readers as well as critics. While her love for reading and writing is second to none, she is fascinated by technology too, and writes about various gadgets and products at www.technotreats.com.
Jyoti’s undefeatable grit and go-getter attitude have won her many laurels. She was recently invited to be a speaker at an event on World Thalassemia Day on May 8, 2015, which incidentally is also her birth date.
Jyoti used that platform as an opportunity to talk about thalassemia, and today advocates awareness about thalassemia on various other forums.
Jyoti feels that even today, awareness about thalassemia and its prevention is minimal. Thalassemia is a genetically inherited disease, is not infectious, and cannot be passed on from one individual to another through personal or any other contact. In India, about 3.9 percent of people are carriers. Thalassemia Major Patients require lifelong blood transfusions and costly medicines for their survival. Often, the blood transfusion needs to be carried out on monthly or even fortnightly basis.
Apart from regular blood transfusions and costly medicines, thalassemia patients are also given Deferral injections that need to be infused over a period of several hours. This means that the patient has to keep the injection and the infusion pump attached to the body over a period of ten-twelve hours, several days a week. The only treatment available for this disease is a bone marrow transplant, which is very expensive and risky.
While the treatment of thalassemia can get complicated and expensive, the best solution is to prevent the occurrence of the disease. In fact, a child can be Thalassemia Major only when both parents are Thalassemia Minors. The probability of the child being a Thalassemia Major in such a case is 25 percent and can be detected during the early stages of pregnancy.
Jyoti feels that society at large needs to accept and assimilate people like her in the mainstream. She is not sick or feeble or unintelligent just because she is a thalassemia patient. She, in fact, advocates the importance of considering herself equal to one and all. Jyoti feels that she is more than an illness—she believes in her identity as a novelist, a blogger and a woman.
References:
https://www.nhp.gov.in/thalassemia_pg
https://medlineplus.gov/ency/article/000587.htm